National Human Genome Research Institute

National Institutes of Health U.S. Department of Health and Human Services

Statement from Francis S. Collins, M.D., Ph.D.

Director, National Human Genome Research InstituteNational Institutes of HealthDepartment of Health and Human Services

On Passage of Genetic Information Nondiscrimination Act of 2008 by the U.S. House of RepresentativesMay 1, 2008

It is a great pleasure for me to be standing here today, a day when Congress has finished its work on the Genetic Information Nondiscrimination Act (GINA) of 2008 and is sending it to the President for signature. This is a great gift to all Americans. It will make it safe for Americans to benefit from the medical results of the Human Genome Project, in which they invested so much. It will make it safe to have their genes examined without fear that they may be discriminated against in employment or health insurance. This is a great day.

I want to thank the bill's champions in the House of Representatives who have worked on this issue for so many years, especially Rep. Slaughter and Rep. Biggert, and the many committee chairmen and others in leadership who have worked to make this day possible. I also want to thank the leadership in the U.S. Senate, especially Sen. Kennedy and Sen. Snowe, who have championed the bill in their chamber.

I also want to thank my colleagues in the department: Secretary Michael Leavitt who has been a strong supporter of the need for the legislation, especially as it supports his personalized medicine initiative, which clearly is the future of medicine. And NIH Director Elias Zerhouni who has worked tirelessly to explain why it is so important to support the bill and whose own vision of the future of medicine is one that is predictive, personalized, pre-emptive and participatory. And, of course, my fellow institute and center directors who also have supported GINA. We are living in a remarkable time when it is becoming possible to look into our own genetic makeup to predict the ills to which we may be at risk, to prevent many diseases from occurring and to design treatments based on our DNA blueprint that will both effectively treat the illnesses while avoiding undesirable side effects.

Finally, I want to thank President Bush, who has been a strong supporter of legislation to protect individuals from genetic discrimination for many years. When he came to visit NIH last year, he called on Congress to send him a bill that he could sign. And now, with the passage of this legislation, I look forward to that day soon when he gives all Americans the protection they need to freely participate in genomic medicine.

And we know these protections are needed. In a survey only this past January, more than 4,500 Americans were asked about their attitudes regarding genetic testing. Ninety-three percent said an employer should not be allowed to use genetic information to make decisions about hiring or promoting a person and that a health insurer should not be allowed to use genetic information to deny insurance or charge higher prices. More than three-quarters of those surveyed by the Genetics and Public Policy Center at Johns Hopkins University said there should be a law to prevent such discriminatory practices.

Now they have it. This bill could just as well be known as the bill to protect people with DNA, and that would be all of us! Since each of us has dozens of genetic variations that may put us at risk for disease, we all would have had a reason to be concerned about the possible misuse of genetic information. With this act, Americans won't have to worry about their jobs or their health insurance being taken away because of the genes they inherited.

This is a momentous day. Thank you, members of the U.S. Senate and the U.S. House of Representatives, for giving a wonderful gift to the American people: protection from genetic discrimination.